Eating to Make a Difference Why nutrition for Down Syndrome matters - PowerPoint PPT Presentation

Eating to Make a Difference Why nutrition for Down Syndrome matters Matthew Rasberry, RD, CD, CNSC Clinical Dietitian Down Syndrome Clinic

Outline • Down syndrome specific growth charts • Calorie needs • Feeding skills • Creating healthy eaters • Physical activity • Bowel movements • Passing the baton • Recommended resources

What's a growth chart? CDC (2010) 1964 – 1994 ~64,000 children

Down Syndrome Growth Charts • 2015, Greater Philadelphia Area (637 DS children) • Purpose – Screening Tool: compare against other children with DS – same sex and age. – “Are they following an appropriate growth pattern for someone with DS?” • Observations – Comparable to UK DS Growth Charts, 2002 (1507 DS children) – Compared to previous DS charts (1988, USA) – improved growth! • Nutrition Implications – Infancy – feeding difficulties/delays – Childhood and beyond – lower calorie needs, poor diets, inactivity, etc. Pediatrics. 136 (5). 2015 .

DS Chart vs. CDC Chart (0 – 36 mo) Boy plotted on DS growth chart at 50%ile, same measurements on CDC CDC Height DS Height DS Weight CDC Weight

DS Chart vs. CDC Chart (0 – 20 yrs) Boy plotted on DS growth chart at 50%ile, same measurements on CDC CDC Height DS Weight DS Height CDC Weight

Tracking on the Growth Curve “Crossing lanes/percentiles” “Following his/her lane” “Tracking appropriately” DS Weight DS Weight Taken in context: Height/length, Parent’s height, medical issues, etc.

Down Syndrome and BMI Pediatrics. 138 (4). 2016.

Down Syndrome and BMI • BMI (body mass index) – compares weights vs. height • DS population higher incidence of obesity (30 – 50%) • DS Growth Charts for BMI merely describes the population – optimal? • CDC BMI growth chart is good predictor of excess body fat – Goal = BMI <85%ile (correlated with excess body fat mass) – Greater >85%ile BMI = increased risk for heart disease and/or insulin resistance ? Pediatrics. 138 (4). 2016.

Calorie Needs in Down Syndrome • 2013 study compared calorie needs in children Down syndrome versus their siblings without Down Syndrome 1 lb fat = 3500 calories – 28 individuals with Down Syndrome vs. 35 siblings – Ages 3 – 10 78 calories/day x 365 days/year = 28,470 calories/year 28470 calories/year ÷ 3500 • Results calories/lb. = ~8 lbs/year – Individuals with DS use 78 calories less per day (~5-10%) – Why? • Probably not the main reason for higher BMIs – Definitely not the only reason Eur J Clin Nutr. 67(10). 2013.

Dysphagia (Difficulty Swallowing) in DS Signs and Symptoms • Coughing • Choking • Arching/stiffening body during feeding • Irritability or lack of alertness during feeding • Refusing food or liquid • Difficulty accepting different textures • Increased feeding times (longer than 30 minutes) • Decreased alertness during feedings • Difficulty chewing • Difficulty breast feeding and/or drinking from bottle or cup • Loss of food/liquid from the mouth • Increased stuffiness during meals • Gurgly, hoarse, or breathy vocal quality • Difficulty coordinating breathing with eating and drinking • Frequent vomiting • Recurring pneumonia or respiratory infections • Less than normal weight gain or growth American Speech-Language-Hearing-Association-“Pediatric Dysphagia”

Learning to Eat • Can take longer for children with Down Syndrome… – Low muscle tone, difficulty with muscle/motor coordination, swallowing difficulties, sensory issues, medical complications • Transitions and food textures based on skills and ability, not age • Offering foods that match skill/ability level → better nutrition – Speech and/or Occupational Therapy Nutrition Focus. 26 (5). 2011. Family meal Small, soft pattern Mashed pieces Foods

Expanding Food Selection “ Eating for pleasure or profit: the effect of incentives on “Yummy” children’s enjoyment of vegetables” (UK 2010), 2012 Cochrane Review – 422 children, ages 4 – 6, United Kingdom “Just okay” – Repeated exposure (Carrots, bell pepper, sugar snap peas, cabbage, cucumber, or celery) – 12 exposures over 12 days, assess at last day, 1 month “Yucky” out, 3 months out – Groups – tangible reward (non-food), social reward (praise), no reward, control ½ cup “ Parent-Administered Exposure to Increase Children’s vegetable Acceptance a Randomized Controlled Trial” (UK ¼ cup 2014) • 3-4 year old twins (442 children), mailed instructions - 14 2 Tbs exposures

How execute 15 – 20 exposures • Meal Structure/Consistency – 3 meals, 2-3 snacks per day, ~2-3 hours apart, time limits – Only offer water in between meals/snacks, no grazing • Division of Roles – Parent – what (this or that, don’t be short order cook), when (at the set meal time), where (at the table) – Child – how much (Don’t eat it? Still hungry? Have to wait until next meal/snack…) • Developmentally appropriate foods (the right texture) • Role modeling (Food Dudes vs. Junk Punks, Eur J Clin Nut 2004) • Make meals social and positive, ↓ distractions • Food Chaining = new foods similar to a preferred food (shape, color, taste, texture, etc.)

My Pizza Plate Chose MyPizza . gov

My Ice Cream Bowl Chose MyIceCream . gov

Choose My Plate

Food Preparation • Cut up fruits and vegetables when you get home from the store • Make extra; freeze some for another time / freezer meals • My favorite way of cooking vegetables = roasting • Fresh, frozen, canned – I’m fine with it all – Canned Fruit – 100% juice, drain the juice – Canned vegetables – drain and rinse – Frozen = sometimes the best nutritional content

Quick Nutrition Tips • Don’t drink your calories (except low fat dairy) ~8 fl oz = • My Plate = variety = complete nutrition • Protein and fiber help with satiety • We are designed to like Sugar, Salt and Fat (hedonism) – Keep it out of the house, its difficult to fight nature – Moderation is key • Supplements don’t replace food, at best, supplements are an insurance policy. First do, no harm. Let doctor know.

Physical Activity • Goal = 60 minutes of physical activity (CDC) – I prefer “60 minutes of moving a day” • Benefits for Exercise – Burn calories, helps maintain a healthy weight – Increase mitochondrial function – Helps build and maintain bone and muscle – Reduce risk for heart disease, insulin resistance/diabetes, cancer, and other conditions – Help with mood, self-esteem, stress – Improve cognitive performance in DS?

Constipation • What is constipation? • Constipation is common in DS – low tone, lower activity levels, poor fluid intake, low fiber intake • What helps? – Fluid – Staying Active – Fiber (fruits, vegetables, whole grains) – Avoiding excessive amounts of dairy – Medical management (laxatives, softeners, fiber supplements) • Only with Doctor supervision • Constipation =/= fun

Passing the Baton • Grocery Shopping – I-spy, scavenger hunts – Grocery lists – cut pictures from grocery ad, shopping list with pictures – How to select good foods – appearance, expiration date, packaging intact • Helping out with cooking – Adding the ingredients, mixing, measuring, setting timers, etc. • Occupation Therapy – Overtime, create their own cookbook of favorite recipes – Meal planning (pictures/flash cards) – calendar, grocery list • MyPlate method – Learn portion control – How to make a balanced meal Try activities on www.Choosemyplate.gov/kids –

Take Home Points • Individuals with Down Syndrome have different growth patterns • Feeding difficulties during infancy put the child at risk for inadequate nutrition. – Seek help when appropriate. • Excessive weight gain as individuals with Down Syndrome get older is a significant and relatively common concern. – Diets don’t work – Gradual, behavior and lifestyle changes • Expanding the diet takes time, patience and persistence • Healthy bowel movements are a big deal

Resources • www.Choosemyplate.gov • https://www.choosemyplate.gov/kids • Down Syndrome Nutrition Handbook by Joan Guthrie Medlen • Ellyn Satter (Child of Mine, How to get your kid to eat…, Secrets of Healthy Family) • Food Chaining by Cheri Fraker

Questions/Share • Ask a Question OR • Share an experience – Increased variety/food selection – Manage weight issues – Transition with solids/textures – What physical activities have you incorporated – Promote fluid intake – Improved bowel movements – Transitioning responsibility of diet – Any other nutritional experiences